crazy ass results

Hey everyone. I got my first blood test results and I am very upset. I have no idea how severe these numbers are and how long will it take to feel at least a bit better but I just can't do this any longer 😔

TSH is 227 (0.27-4.20)

T4 is 1.3 (12-22)

Antibodies 1328 (<109) 

I'm starting 50 mg levothyroxine (in a golden package) today, and will have to double it after a month. 

I also started to take Centrum Performance, my doctor said it's not really necessary, however I've been anemic before and I am very sure that I don't have my vitamin and iron levels right. It has all important minerals and vitamins. I've been to a blood test twice this month and just don't understand why she didn't request a more detailed test as everyone here seems to know that it's important. 

Also, I'm no expert but is there any way finding out the reason for these very bad results and the the illness itself? What causes these very extreme results? 

And I consider myself pretty durable, I used to work around 70hours a week as store manager in a subway, so I am tough but now I can't even walk for thirty minutes and it's making me crazy because I do want to work but I just can't and people don't believe me that i can't. And I've been living on my boyfriend's salary for two months now and it makes me sick😭 and I can't apply for any benefit to make it easier for him. Can I? 

11 Replies

oldestnewest
  • This is truly dreadful.  Your thyroid hormone levels are dangerously low.  As a young person in this condition you should have been started on 100 mcg levothyroxine, or possibly 50 mcg with a follow-up after a week.  Your doctor has been negligent.  Is there more than one doctor at your surgery?  I suggest you ask to see another urgently for a second opinion, especially as the Easter weekend is coming up.

    It would be a good idea to make sure you keep copies of all your blood test results and make notes.  Also take a photograph of yourself now for future reference, in the future you will be amazed at how bad you were and how you have improved.

    You should feel much better in a few weeks although it will take up to a year to fully recover.  I have noticed that people who have very low hormone levels often recover very well.  I am a patient not a doctor but I read a lot of research and have never seen an fT4 as low as 1.3.  I think it is only due to your fitness and young age that you are not in a coma (don't worry the levothyroxine will prevent that now).

    I don't think we have ever met anyone who has done so well with such extremely low thyroid hormone levels.  You are a star!

  • OMG, no wonder you can't cope!

    You have autoimmune thyroid disease, aka Hashimoto's. You have sky high antibodies which will attack your Thyroid and eventually destroy it. The best way to dampen down the attacks is to go scrupulously gluten free, some people need to be dairy free also.

    Your TSH is very high and your FT4 unbelievably low. The levothyroxine should bring down your TSH and raise your FT4 but it's not instant. You should have a retest of your thyroid levels after about 6 weeks and your dose adjusted, then re-tested after another 6 weeks and another adjustment, etc. However, with Hashimoto's you can swing from hypo to hyper which is why it's a good idea to try to minimise the attacks by going gluten free.

    You should ask your GP to test for

    Vit D

    B12

    Folate

    Ferritin

    These need to be optimal (not just in range) for thyroid hormone to do it's job.

    I'm not sure Centrium are the best option for a supplement, you really need to know your levels and supplement accordingly with good quality ones.

    How long have you been ill and off work? Have you asked your GP for a sick note? Unless you've given up your job voluntarily, and you are "off sick" with a note from your doctor, you can apply for benefit, not sure what sickness benefit is called now but you should look into this.

    Donsome reading and research, look into hypothyroidism and Hashimoto's, learn all about it. A good place to start is ThyroidUK's main website.

  • Yes, I totally agree with SeasideSusie - individual supplements are far better than multi-vitamins.

    Combined vitamin and mineral pills tend to have very poor quality ingredients and dosages which won't help a nutrient-deprived flea.

    One common example - magnesium is often included in multi-vitamins as magnesium oxide. It is very poorly absorbed and won't do much to actually improve magnesium levels. There are far better ways of supplementing magnesium e.g. handfuls of epsom salts in the bath to soak in, magnesium oil sprayed on the skin, or magnesium citrate supplements which are just swallowed. There are other forms of magnesium supplements in pill form.

    Another example - multivitamins have vitamin B12 in the form of cyanocobalamin. For better absorption people often need methylcobalamin instead.

    Folic acid doesn't help many people - the better option is usually methylfolate.

    See your doctor and ask for a sick note. Nobody should be expected to stand up and walk with results like yours!

  • You could also ask for cortisol test (should be done at 9am) and celiac (if you are planning to give up gluten, do the test first). You may still benefit from going gluten free even if you don't have celiac.

    May be a good idea to make a list of all these tests and hand to your GP. When you get the results post them in a new message and members will comment on your levels.

  • Nadafaka,

    NICE CKS recommends 50-100mcg is an appropriate starting dose for patients <50 years of age without heart disease.  Ask your GP whether dose can be increased to 100mcg in 2 weeks.  You should have a follow up thyroid test 6-8 weeks after taking 100mcg. Arrange the blood test early in the morning and fast (water only) as TSH drops after eating and drinking.

    cks.nice.org.uk/hypothyroid...

    For maximum absorption take Levothyroxine with water 1 hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrgen.

    There is information on Hypothyroidism and Hashimoto's in the links below which will inform you further.  Don't try to take in everything at once, it's very likely your concentration and memory will be significantly under par for sometime.

    thyroiduk.org.uk/tuk/diagno...

    thyroiduk.org.uk/tuk/about_...

    thyroiduk.org.uk/tuk/about_...

    chriskresser.com/the-gluten...

    It's likely to take several months before you feel well enough to work so ask your GP for a sickness certificate and make a claim for ESA benefits.

    gov.uk/employment-support-a...

  • Arrange the blood test early in the morning and fast (water only) as TSH drops after eating and drinking.

    To add to Clutter's excellent advice... Make sure you don't take any levo for 24 hours before you get blood taken for testing. Instead, take the missing dose immediately after the blood is drawn.

    So, for example, if you normally take your levo at 7am and your blood test is on a Wednesday, then take your levo at 7am on Tuesday as normal, get the blood drawn on Wednesday morning, then take Wednesday's dose of levo after the blood is taken.

  • It sounds like you in the USA

    Your TSH is astronomical hence you are incredibly hypothyroid and must feel very ill indeed ...every vitamin and mineral in the body gets seriously depleted in hypothyroid (my husband had scurvy and beri beri despite a perfect diet )

    Doubling from 50mcg to 100mcg in just 4 weeks is pushing things too far in my opinion

    Its normally recomended increasing by 25mcg every 3 to 4 weeks and it takes a long time to recover from the level of hypothyroid you must be suffering 

    Your TSH needs to return cliser to 1.0 and your free t4 and free t3 should both be in balance in the upper quadrant of their ranges

    You will need rest and patience in order to recover

  • You asked for the reason that you have this disease, and that is one we would all like a good answer to. Your high antibodies show that you have autoimmune thyroiditis as SeasideSusie said. As far as I know there is no credible research showing a causative link - so you are just unlucky. 

    People with one autoimmune condition often develop others. And there is some evidence that gluten is involved in many autoimmune processes. Certainly, going onto a gluten free diet helps many people reduce their antibody count. Although the destruction of the thyroid gland can't be stopped, it can be slowed down by eliminating gluten, and this in turn tends to help people stabilise their thyroid hormones.

    I am amazed that no doctor has ever tested your thyroid before. You must have felt so very ill for such a long time. 

  • A few extra comments.

    It is traditional for patients with primary hypothyroidism to be started on 50 mcg levothyroxine and then a repeat blood test carried out after six weeks and probably a dose increase to 75 mcg.  However, the current approach is to start patients on 100 mcg and have a follow-up blood test and dose adjustment after a month - provided they are not elderly or have a heart condition.  In your case I can understand starting you on 50 mcg because where the hypothyroidism is severe the adrenals can be a little weak and there is a small chance the patient reacts to the levothyroxine.  In this situation as the adrenals recover the dose is slowly increased.  However, in your case you are most unlikely to have any problem with levothyroxine and there is no reason it shouldn't be increased after a week or so.  Delaying getting the patient up to 100 mcg only prolongs their agony, there is no reason to drag out the therapy.  If your GP has doubts ask him to telephone a local endocrinologist and check.

    Whilst I can understand your GP may not be up to date with the latest treatment plans (GPs have to cover so many diseases) he should not of delayed starting your treatment.  He should have put you on levothyroxine straight away and scheduled another blood test.  (There was no reason to question the first blood test as the TSH, fT4 and antibody counts are consistent - he needs some training).

    In your earlier post you mentioned 'disgusting fat'.  Actually, this is quite correct!  The fat you put on from hypothyroidism, especially around the face is not pretty.  It's not like some people who are rather fat but attractive with smooth skin.  This appearance will disappear once you have been medicated for a month or two.  However, we tend to find that although we lose weight when medicated we don't get back to our original weight.  Some of the weight gain tends to stick.

    It's also important to be aware that as well as all the real physical symptoms hypothyroidism can cause emotional symptoms as well.  It can make one profoundly apathetic or insular.  It makes some people suffer depression.  In my case I became irritable which made others depressed!  This should resolve quite quickly.

    Also, hypothyroidism can destroy your libido, until you are adequately medicated.  So along with a bad body image the lack of hormone switches you off.  It can also cause all sorts of temporary menstural problems.  You can chat to the ladies on the forum for more details.

    High antibodies can cause the thyroid to go haywire occasionally producing more hormone but generally on a downward trend until it finally packs in.  Thus, it can be tricky getting the right levothyroxine dose until the thyroid settles down.  However, in your case with very high antibodies and a rapid onset of hypothyroidism I suspect your thyroid will stop producing horome very soon, if it hasn't already done so.  This is good news as you should be stable once your dose has settled down.

    Next time you see your doctor it would be a good idea to write down any questions and take someone along with you for support.

  • Hi, I agree with everything that the other replies has said. I wonder why you haven't had your t3 tested too. Your tsh and t4 won't tell you how well your t3 is wotking and this is the active hormone that your receptor cells need. T4 is inactive and 60% of it converts to t3. If you dont have enough t3 then you have a problem converting. At least that is my understanding, but if I'm wrong someone will correct me. Yout t4 is so low that you must have very little t3. So get that tested. 

    Take a look on the thyroid uk website too, especially about testing and hashimotos.

    Good luck. :-)

  • Good luck in feeling a lot better quickly. With an FT4 level that low I would imagine you can feel the difference from the first pill! You will know if you are taking too much too quickly because you will start to get a fast heartbeat. Read up about hypothyroidism and the symptoms and become your own expert. 

    Let us know how you get on - it's always encouraging to hear stories of improvement, and let's face it, you can't get much worse!

You may also like...